My endless thanks to all of you on this journey with me extends to the Veil Nebula and back. I waited to post something until now, when all the current test results are in and I am sure what kind of surgery I’ll have. Lots of very good news to share.

Here’s what I’ll include in this post:

Surgery Date Set

The Things a Doctor Should Never Say

My (relevant) Medical Minutiae

Visits, Support, Fundraising, etc…(SCROLL WAY DOWN)

Per requests -> thoughts on communication from my first post --Difficulty in Talking About Difficult Things--

In researching and asking a handful of my cancer crew, I can anticipate that it will be fast and with very little fuss. I’ll be home that day and will be resting in bed for just a bit. My friend Geri had the surgery on a Thursday, rested in bed for a couple days, took it easy and was back in the office the following Wednesday. Another friend said the she stretched it out to a week of rest, but only because she really likes laying in bed :)

If you’re like my mom, and likes to read a lot more detail, there is more in #3 down below. Have at it.

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2) The Things a Doctor Should Never Say

- now that we are at Day 61 and I am looking ahead to surgery next week, I think it’s a good time to reflect back for a moment on Day 1. [[PLEASE NOTE: the following is about Day 1 of finding out the diagnosis from my previous primary care physician, BEFORE i started with City of Hope. I don't intend to go back to the physician I'm speaking of in the piece below.]]

from a reading I gave at La Palabra hosted by the fierce Karineh Mahdessian and before that, included in a set for “Letters with Edren” alongside Edren T. Sumagaysay at Sunday Jump hosted by the fabulous Eddy Gana Jr. and Steph Sajor in Historic Filipinotown -

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Monday, June 20, 2016

Day 1

A doctor really shouldn’t do what she did

A doctor should enter the room calmly

A doctor should stay in the room once she’s opened my file instead of rushing in and out

A doctor should look like she knows what she’s doing, if only for the sake of the patient and the patient’s partner who is now frozen in place because the doctor can’t just say the word.

A doctor should not begin by saying:“This is so hard. I don’t know how to say this. You’re so young.”

A doctor should begin with:

“I don’t want you to worry. You will be fine. There is amazing technology around this now and we will fight this so hard, it never comes back.”

I take joycey’s hand and tell her not to worry.

I look my doctor in the eye and say, “It’s okay...just say it.”

If anything, a doctor should just say it.

Because I can’t.

Not yet.

The doctor must go first.

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3) My (relevant) Medical Minutiae

WHY Lumpectomy? I decided 100% on it just yesterday, after the results from a broad panel of genetics testing came back as clear. Just prior, I was waiting for results from an MRI-guided biopsy ((which I hope to never ever do again...don’t worry, I’ll save you from the pics of popped blood vessels protruding like little worms from underneath my skin. Instead I’m sending those pics to the doc, to give some constructive criticism on the compression pressure by the end of my biopsy)). Something showed up in the initial MRI a few weeks ago, but just turned out to be Intraductal Pathaloma - something that can be monitored. Since we have a surgery date, Dr. Kruper will go ahead and remove that tiny area, too.

“There’s an epidemic of people having bilateral mastectomies,” said Dr. Weitzel, the genetics oncologist. Mastectomy is highly invasive and in this day and age, he explained that people with Stage 0, 1, and 2 can go forth with Lumpectomy(+Radiation) more times that not, because there is no difference in terms of survival rates and little difference in recurrence rates between the two operations.

At around 1.8 cm for my tumor and less than 5 cm for the area of DCIS, they said it’s safest to say WE CAUGHT IT AT AN EARLY STAGE. Essentially -- mine is Stage 1 -- this is GREAT news. It basically means, along with being ER/PR+ and HER2-, that it is slow growing and not as aggressive as other forms.

“Will I have to do Chemotherapy? Radiation? Pills? What?” - a) Chemo is not known until after surgery (in my case). So, during surgery they will get a sample from the Sentinel nodes and do a Sentinel Node Biopsy after the surgery. If I am node negative (which is good because it hasn’t gone into the bloodstream), then they will run the Oncotype DX test, to give me my rate of recurrence score and to tell me whether chemotherapy will work on my type of cancer. I am pre-menopausal; I have Invasive breast cancer and I have extensive DCIS - you can read more here: http://www.breastcancer.org/treatment/chemotherapy/who_gets_it

c) Pills? Because I’m ER/PR+, I’ll need to go through hormone therapy. This may mean an anti-hormone pill. I won’t go into full detail at this moment (because, first things first, like surgery) - but this is a whole other category of thinking for me. I am so utterly not a fan of long-term prescription medications. I don’t want to mess with my hormones. I may freeze my eggs. I may need to stop taking this pill if I’m the one who wants to be pregnant with my eggs. I am thinking many things. It’s all good. My window is drastically, hastily seizing on a major potential plan. It’s all good, but I’m still processing.

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4) Visits, Support, Fundraising, etc…

If you’re still reading this far or you’ve scrolled down just for this, I gather you might hold a strong intention to visit, offer support and/or want to know what I need and want at this time and through the next steps.

So, with visits - we’ll do it in blocks over time. I always look forward to seeing friends and family and at the same time want to respect my energy levels, joyce’s sanity, and asks of nearby friends in helping with clean up, post-gatherings. If you haven’t done so already, please fill out the form at the bottom of this blog. We’ll email you with best dates and times over the next week and/or the following months.

So, with funds - I got major-angel help to get onto the best plan possible that would allow me to see City of Hope. I’ll be on this particular healthcare plan for the next 10 months or so. I’m also incorporating complimentary alternative care including Reiki, Acupuncture and cannabis treatments (yes, I have my medical marijuana card). My community has encouraged me to accept the abundance of support in all types of ways - grassroots community fundraiser extraordinaire & API Equality-LA E.D., Audrey Kuo**- suggested I work through feelings of guilt for asking a community that gives in so many ways & is constantly hustling as artists and educators and organizers….so I am trusting you will not give beyond your capacity.

And I say this endlessly -> if you are not able to give funds at this time, please know I am completely grateful for any, other and all ways you want to support me through this journey. (scroll to the bottom of this page if you want to provide offers of help or best wishes)

**And by the way, here’s a link to API Equality-LA if you’d like to donate to them:

5) Per requests -> thoughts on communication from my first post

--Difficulty in Talking About Difficult Things--

Speak freely -> when we see each other, it’s okay to tell me you heard from someone that I have cancer, or you read this, and then share with me what you’re thinking. It’s okay to tell me that you’re freaked out; that you don’t want me to lose my badass hair; that you have great news (of course I want to hear it!); that you have tough news (of course I want to hear it); that you want to be on this journey with me; that you don’t have any clue on what to say.

Stray away from assumptions -> even if you have someone in your life who went through breast cancer, there are so many different factors - everything from Rate of Recurrence to genes to age to psychological & emotional factors related to age and insurance hell and whether we have children, don’t yet have children, etc. etc. etc. (ya know what I mean?!) And, it’s important not to assume in either/any direction in terms of how I’m dealing with this or wanting to deal with this (plus, it’s not a static situation). It’s always better to ask “are you thinking...” or “how…” than to say “you should/you have to...” first. Yeah? With cancer or life in general, I have found this to be a great rule. For instance, people might assume --because I’m a long-time organizer, director, planner-delegator and a make-things-happen kind of person-- that I want to coordinate the effort around support through this next phase of my journey. The answer to that would be a definite NO. I nearly jumped for joy when my friend Audrey came over with their amazing bread AND with their laptop - to show me spreadsheets they will create to organize friends'/family's offers of support. Hallelujah and HELL YEAH!!! I LOOOOVE when other people plan things...you have no idea...

Let’s talk as usual, as “normal”-> After quite some time of hanging out with my friends Sue Jin & Matt, I asked Sue Jin how this kind of news feels to her. I was curious what she was thinking and wanted to make space for her, on the receiving end. I understand how odd it can be for the friends to hear this kind of news. Then the floodgates sort of flew open. She told me, as soon as she walked into my home, she had wanted to ask me and tell me a ton of things - “What’s next?” “What do you need?” and so on. She added that she is still processing this and also wants to “be normal with me.” So, here’s my thinking - this is a new “normal” for me. Cancer doesn’t define me in total, but it will impact me for the rest of my life. There is that point before cancer, and the point from which we turn toward fighting and surviving it and, dare to say, thrive in the long run with it. So, again, let’s speak freely and converse as usual - with laughter and curiosity and utter honesty...on deep shit and silly stuff...let’s have FUN and be real...with cancer, with life.

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If you're thinking - "Hey, I'm ready to help":

First of all - THANK YOU, eternally. Thank you for your offers of help - from rides, healthy meals, care packages and visits, to reiki, mini concerts, poetry readings, FUNraisers and kitty care - we'll gratefully accept it all! Please fill out this form and it will go directly to my great friend, bread baker and ED of API Equality-LA, Audrey Kuo, to be added to a spreadsheet that will list specific ways you want to help. Someone from my care team will also follow up with an email including information on actual needs in the short, mid and longer term, as we learn more over the next several weeks about my medical path. You will not be inundated by many messages. At the same time, please be patient in receiving information about visit days, requests and plans.

you can send a private, direct message to me:

Feel free to tell me: "wow, cancer. holy shit. okay, what's the next step?" Be honest: "I don't know what to say." or "I'm kind of shocked." or "There are great advances in breast cancer care, but it's still hard/weird/shocking to think that you have cancer." It's totally okay to say how you feel as it relates to our friendship/relationship: "we've known each other forever...i'm still processing this myself...sorry, i got nothing to say."

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